My Endo Diary

Today I had a notification to say I had been given The Liebster Blog Award by another blogger and a fellow brave endosister. I will be 100% honest and say I had no idea of what this award meant. After reading the link I was sent I am so grateful to be thought by Endo Joanna from  Living With Endo  when she was compiling her five favourite blogs for this award. Liebster is a German word which means "dearest" or "beloved". It is also used to refer to someone's "favorite" and the idea of the Liebster Blog Award is to bring attention to blogs with less than 200 followers that deserve more recognition and encouragement. I started this blog to help raise awareness of endometriosis. When I was diagnosed I felt so alone and wanted to speak to other people who were going through the same things as me. Twitter and this blog allowed me to do this. I never actually thought others would care to read my blog or my thoughts, it was initially a place t...

I'm FINE . How many times a week do you hear yourself answering with that reply? Work colleagues, friends, family asking 'how are you?' My default reply: 'Fine thanks'. That one word to you sums up everything yet when answering, the person enquiring may not understand the full meaning of the word. F.I.N.E = Frustrated. Insecure. Neurotic. Emotional Frustrated. I'm frustrated that I have endometriosis. Frustrated that I find it so hard to do 'normal' daily things . If I have a busy day today then by tonight or tomorrow I know its going to catch up with me big time! The cramps will come, the pain will increase. I cannot plan things. There's no exact pattern with endo. It can creep up on you out of the blue. Some days you know straight away it's going to be a bad day. Other days it can be so unexpected it will catch you out. You cannot predict which will be good or bad days. You either just have to say no or take your chances, say yes to a p...

Why does endometriosis have to be so frustrating?? So annoying? At times making you feel helpless, alone and fragile. Endometriosis - the name itself is complicated enough to say to those not in the 'know'. Why does the condition itself have to be a million times more complicated. This last week has been so up and down for me. Some days I have been feeling great, doing lots. The next day I'm in so much pain I can't do anything. My bleeding has been changing from very light to practically nothing to heavy with extreme pain and cramps. It gets so bad the memories of good days are hard to recall and bring to the front of my mind. Breaking point came today whilst in the supermarket. It was packed, my cramps had started from the moment I got out of bed. Walking around the supermarket I was surprised people wernt giving me funny looks as I stood in one place holding onto the trolley to try keep me upright. It was hard to walk. Got to the queue to pay when they came worse. ...

Last night was one of the worst nights I've had in a long long time. It started on Thursday when I had my review with the specialists at the hospital. As I've mentioned before I had the mirena coil inserted in February during my lap. I started taking norethisterone in June due to continuous bleeding, it's now nearly September and even though bleeding is light I'm still on every day :( So during the review I was advised to stop the norethisterone (which I have been taking four times a day) and start taking the combined pill again. The reason they explained for this is that the coil and norethisterone both produce proestrogen. They believe too much of this hormone has caused upset and continuous bleeding. So since changing meds Thursday and Friday I was still bleeding but pain wise ok.. I felt extremely positive leaving the review on Thursday. I was happy we were trying something new and felt I was making progress. Last night was a whole different...

I've gone past the frustrated state I was in this morning. I've gone past the anger, the feeling that I would like to slap that Dr right across the face. Gone past feeling annoyed, wound up and livid. I'm now upset. My first ever blog  was about how the majority of doctor's dismiss endo. Today it happened once again.. << Rewind to the beginning of last week (as I stated in my previous blogs), I started a new hormonal medication called Norethisterone to help with my treatment of endo. I am also on evorel patches to counteract the side effects that come with my treatment. Since the new tablets started the patches have not been working and my emotions and mood swings have gone right out of the window. So I arranged an appointment with my GP today for some help with 3 simple things.. 1. A sick note to cover me for my time off from work this week. 2. Higher dose evorel/hormone patch to help me cope with the rise in side effects from the new medication. 3. More...

At the moment I’m sitting at home after having to ring in sick to work, again , having cramps, vaginal pain, feeling sorry for myself. Its my birthday next Sunday.. I’ll be 24. When I had my laparoscopy in February I really thought by the time my birthday came I’d be recovered. Finished with endo. Done. Instead, I’ll be a 24 year old that still has an extremely swollen stomach. Still looking five months pregnant and living in my oversized black cardigan just to try and hide the bloated look a little. I don’t think it works, I most probably still look fat or pregnant to others, but its become a kind of comfort and I hardly go anywhere without it on. Since all this started, my swollen stomach was the first main symptom (along with shooting/stabbing pains) that I had and knew instantly something was wrong. Since then, my stomach has never gone down to what it was before. Granted some days its not as bad, but its never flat or ‘normal’. I’ve forgotten what normal looks or feels like. I’m...

Today its June 13 th . I had my lap February 15 th . Four months on, am I cured? No (wishful thinking).. Have I found all the answers I’m looking for? No not yet.. Am I better? Slightly. But nowhere near as much as I hoped. I now see I was a little naïve to think the I’d have the lap and hey presto! Im back to me again! So where am I now? Well to date, I have had four prostap injections. On the last check up at the hospital we realised that it hasn’t been working for me as it should have. For any that do not know, prostap is similar to Lupron - which is supposed to shut down your ovaries and stop your periods. I however continued to have periods while on prostap and for much much longer than normal. Last month I was on for three weeks of the month! They have decided to try me on a new medication called Norethisterone (I have no idea how to pronounce that?!) a hormonal tablet to be taken three times a day. Its been a week and I have had no spotting, no bleeding. Yay! On the oth...

The last year and half has been a rollercoaster to say the least. Both physically and mentally. For the majority of it, I went through each day thinking I was going mad. That the pain must have been all in my head because every single test that I had done came back clear.  The only obvious result I felt was I getting was that I was going insane. Confusion was an understatement and even to this day there is still a lot of it around. Confusion from doctors not knowing what was causing the pain, ignorance from other doctors not believing I actually did have pain, confusion from test results, from wrong diagnosis and from myself. Just not knowing what to do for the best. Who to go to next for help. Trying to convince myself that what I was experiencing wasn’t ‘normal.’ That I didn’t just have to put up with it. So I spent endless time googling symptoms (…bad idea). Although I still do it now - I cant seem to stop myself! I think I may have a slight addiction.. Free Advice: Trying to ...

So, it's been a week and half after my second Prostap injection (similar to lupron/zoladex) and I feel (dare I say it...??) FINE! :) Great actually.. Someone asked me this week how I was feeling and I answered 'happy'..I had to double check it was me who wrote it! I even caught myself singing on the weekend! ;) Wow! It's honestly been the best I've felt in over a year! I was umming and ahhing whether to write this blog or not because I didn't want to 'jinx' myself and set myself up for a fail. But I come to the conclusion that it's definitely something to blog about, a cause for celebration! Don't get me wrong, I still at times feel awful. Mind of a 23 year old, body of an 80 year old with all my aches, and I still get days when I can't even bring myself to get out of bed. Other times i'm wide awake til stupid o'clock in the morning, only to sleep a few hours then BANG! Wide awake again. I still need to take painkillers, have backach...

As I was blasting the music out of my headphones this week, this one song in particular really stood out.. 'Alicia Keys - Superwoman' . The words all the way through the song are spot on and can mean so much to so many different people. But I thought how true these words in particular were for us endosisters dealing with endometriosis on a daily basis... "...Even when I'm a mess, I still put on a vest With an S on my chest Oh yes, I'm a Superwoman..." But somedays, we just have to. No matter how much pain we may be in that day, no matter how emotional or all over the place we are feeling, or just plain exhausted. We just have to carry on and get through the day the best we can. Whether its because we have to work, go to school, college, do the weekly shop, look after children, housework - anything. Even the smallest of things can be a huge mountain to climb at times. But I just wanted to let every woman who may be reading this know that we are s...

This week was the first week in over a year that I started to feel myself again. Dont get me wrong, I've still had down days and im sure there's more to come, but recently they've been just days or sometimes just hours, not weeks. Started back to work on monday, granted I havent done much there yet but im easing myself in. What i've been finding though is because I work 5pm - 10pm, by half past seven/eight o'clock im exhausted! Been struggling to keep my eyes open and thats not good when working in a call centre! The 'PING' noise when we get the next call through should wake me up though! Then when im home im wide awake and cant sleep! The proper work will start next week so will have to see how I go. Wish It was a job that I loved, then it would make it so much easier going to work and try to cope.. Boses have been asking me what am I going to be like next week? How will I cope? What will I do if im not well on a call? Honest answer...I can't tell you....

I love quotes. Quotes about love, quotes about friends, about family, happiness, times of sadness or celebration. Pretty much every subject. I have been collecting quotes for over four years now and have a book full of all my favourites. However, I recently came across one that really made me think. "You only see what I choose to show.. There's so much behind this smile you just don't know.."   It made me think how greatly this relates to us girls with endo and also applicable to many, many other things in life. It's amazing what a smile can hide. Such a little thing, yet it covers up a whole backlog of emotions. It can hide pain, lots and lots of pain. When our bodies feel like they're screaming out and the whole world can hear. It can't. For us inside it's like a constant scream, cry or sometimes when lack of energy hits, just a wim per. But when people ask how I am, I've noticed my usual response is "Im ok thanks, getting there" o...

How many doctors have I seen and received totally different advice from? In the last year alone, at least six. Whether all that information was correct, I beg to differ. It seems that during my time coming to terms with having endometriosis I have done so much research on it I actually believe I know more on it than most of the doctors I have seen. Why haven’t the doctors done this type of research? I mean this is their jobs right? Yet I find most of my time repeating my symptoms over and over again, trying to explain myself and convince them its not 'normal'. When I first felt something wasn’t quite right, with reluctance I went to my doctors and explained my symptoms of pains in my stomach. Sometime short, sharp stabbing horrendous pains, others dull aches or a twisting feeling inside, tiredness, emotional.. She dismissed me. Told me to keep an eye on it and come back if it gets worse. Gee thanks, great help that doc! Being naive as i was at that time, that’s what I...